So, here I am again, at the base of yet another cliff. Except, this one doesn’t even feel like a cliff to me. It feels like I just took a step down, like, I don’t even feel like I’ve scraped my knee this time.
Remember how I said last week that my doctor and I both suspected I was having progression? Turns out we’re both very smart, because indeed, I have some liver mets now. The largest one is 1.5 cm, and I’m having it biopsied this week to confirm it’s indeed cancer, and if so, what flavor. Let me take you in the way-back machine to last spring, when I first got diagnosed, because this will help you understand what we hope to learn from the biopsy.
So, when I first had the biopsy of my breast tumor, the pathology lab at the community hospital where I go for care decided it’s neuroendocrine breast cancer. NBC is extremely rare, like, 20 US cases per year. Not 20 mets cases, 20 total cases. Like, really extremely fucking rare. Neuroendcrine cancer in general isn’t super common, but when it happens, it usually starts in your digestive tract or your lungs, not your breast. NBC tends to be a bit more aggressive than regular breast cancer.
My doc sent the tissue sample to a second lab, who came back with a different diagnosis, based on the exact same sample: invasive ductal carcinoma with neuroendocrine features. How these two diagnoses differ, I’m not really sure; I think it has to do with how neuroendocrine-y the sample is? But the path lab at the community hospital was like “NO! IT’S NEUROENDOCRINE! I’LL FIGHT YOU!” That is to say, they felt strongly that they were right. My doc decided to treat both the neuroendocrine aspects, and also the breast cancer aspects, by choosing chemo drugs that would work on both. And I had a pretty good response to those drugs. My breast tumor shrank such that when the mastectomy happened, it was just scattered cancer cells in a field of scar tissue, instead of a 7 cm tumor. And the hip and sternum tumors were no longer cancerous.
The thing the two pathology labs agreed on was that my cancer was estrogen-receptor and progesterone-receptor positive, and HER2-negative. Some breast cancers are positive for all three; some are positive for just one or two of those; and some we call triple-negative, because they’re negative for all three. Now, ER+ cancers like mine should respond to what we call endocrine therapy: drugs that strip the estrogen out of your body and prevent any estrogen that’s left from attaching to your cancer cells. Unfortunately, because we’re seeing all these new tumors, we know that my cancer isn’t responding to these drugs.
So, what we want to know now is, is my cancer no longer ER/PR+? Cancers can and do evolve, the way bacteria do, and that means they do sometimes become triple-negative over time, the way bacteria become resistant to antibiotics, Knowing I have triple-negative disease will impact my treatment plan, and which clinical trials I’d qualify for. In addition, I’d like another couple sets of eyes on my sample to see if we can figure out if it really is neuroendocrine breast cancer, or not.
And finally, we’re also going to send a sample for genomic testing. You’ve probably seen this on the news or in several recent documentaries–the idea is, we’d take a look at my specific cancer and see what kind of mutations it has. Sometimes drugs designed for other cancers will work on breast cancers that have specific mutations, so it could open up the possibility of using some other drugs on my cancer. We’re also going to get serious about clinical trials now. My doctor says he’s going to put my name on lists for any trial he thinks might help, and having my cancer sequenced could help with that.
What this also means is, I’ll be going back into chemo starting next week. I made my oncologist promise he wouldn’t screw up my book signings (I actually threatened to punch him in the nuts if he did), so y’all better be there on May 4 at Sole Repair on Capitol Hill in Seattle! Get your tickets at this link. I start chemo on May 5, but my oncologist assures me that it won’t screw up the big event at MamaCon, where you’ll get to see me, Rebecca Gallagher, Tracy DeBlois, and Michelle Back on May 15, and there will be free booze. Did I say free booze? DARN TOOTIN I DID. Get your tickets at this link.
In addition to the whole liver mets thing, we’re being proactive on those brain mets and I’m having gamma knife surgery today. I’ll write about what it’s like, and maybe share some photos, in the coming days. As my regular readers know, I usually write twice a week, but with all this treatment going on, I’ll probably be dropping down to once a week instead, but I’m committed to continuing to share my life with you guys. Because, despite everything cancer has taken from me, it hasn’t taken my fundamental need to overshare. So, you all should mentally prepare yourselves for side effect stories in the weeks to come. You’d better hope none of them involve anal burning!